On Tuesday I went up to London to see my consultant, I went armed with a notepad full of questions. I must say that I was extremely pleased with how the appointment went. I felt that my consultant listened to all of my concerns and really wanted to help me.
After explaining to my consultant all of my new symptoms and how they have resulted in an increase of Non Epileptic Seizures due to the pain, my consultant had a couple of ideas. First of all, after demonstrating to him how my neck spasms (it goes down towards my right shoulder, whilst rotating left, so I am in a sort of diagonally skywards position), he decided to administer Botox to my neck.
He administered the first lot of injections to my jaw to help relieve my Ormandibular Dystonia, this was relatively painless. He then went onto my neck. I expected this to be fairly painless as well. I was wrong. It was painful, I feel sorry for my mums poor fingers that I was already squeezing as I really do not like needles that are aimed at me. However I would rather have a couple of seconds of discomfort than hours of a hideous neck spasm.
My consultants second idea, is to introduce Clonzepam into my medication cocktail. At first I shall only take it when I think I am about to have a seizure. If that does not work then I shall start taking it nightly. His theory is that when I am in severe pain, my body goes into fight or flight mode and my bodies way of fleeing is by going into a Non Epileptic Seizure, therefore the medication should prevent my body from feeling like it has to fight or flee.
We discussed the role of dopamine, and he feels that my Dystonia is not dopa-responsive, so does not want to do a trial of levadope. Whilst this is disappointing, I can understand why he feels this, I know that I was only hoping I could try it, so that if did work I would be able to return to university in September. However I am not totally giving up on this idea. From the way my consultant spoke I was given the impression that many treatment avenues are closed for me because of the Non Epileptic Attacks. I am hoping that if the Clonzepam does its role right and stops them, then my Dystonia will be able to viewed in a light that is not tainted by them, it is at that point that I shall bringing up trying Levadope again.
For now I am going to sit back and count down the days to April 18th, when my riding lessons start-up again. I cannot wait to get back to it, its my happy place.
Every Easter my family and our family friends go Egg Rolling. It’s always a great morning out. We decorate our hard-boiled eggs and then compete to see whose roles furthest without smashing. I was slightly worried about how my egg would look considering my hand hates my holding pens, however despite my hand spasming my egg turned out pretty well.
We went up to the local woods, and took the supposedly wheelchair friendly path round. I went wrapped up in several layers of clothes, two blankets and had two hot water bottles on me. It was so cold that snow from several days ago was still on the ground. I am happy to report that I survived the cold despite a few spasms and seizures – that’s another point to me Dystonia alien. It was so nice to be out and about.
Above is a picture of my egg. I’m rather proud of how well it turned out despite my spasming hand :-).
I am also happy to report that my consultant has been in touch and has agreed to administer botox injections to my jaw tomorrow! I am still waiting to find out a time, however I am extremely relieved to know that it can be done so quickly! I shall take advantage of this appointment to discuss with him the recent sudden changes in my condition.
I am exhausted but feeling much happier knowing that tomorrow I get to see my consultant!
Today has felt like someone has lit a tiny candle at the end of long tunnel, one that I am still at the beginning of. I cannot turn back, all I can do is head towards the tiny flickering light I can see in the distance. I must jump, duck, slide, and fight hurdle after hurdle on my way to that light. That light is hope! Finally being able to see it, feels like I can put everything into perspective. I can breathe, and acknowledge that no matter how much I have to go through, no matter how much physical and emotional pain I have to go through, there is happiness at the end. I will get my happy ending!
I am the type of girl, who wont just sing in the shower, I will sing under my breath in the shop, I will sing at the top of my lungs in my house. Singing, for me, creates happiness. And if by chance I am singing a song from a Disney film such as Pocahontas or Mulan, then I am completely joyful and content. However, I cannot sing when I am unconscious I cannot sing when my body is bend backwards due to a spasm in my back, and my neck is trying to over rotate due to another spasm. Agony, causes me to have Non Epileptic Seizures However this weekends agony, took things to a whole new level.
Saturday night, my neck and back were awful. I could not move without setting a spasm off, and as soon as I had a spasm I had a seizure. It was a vicious circle. One that I have no recollection of. My mum ended up having to sleep in my room that night, due to the agony I was in and the lack of consciousness I had. Eventually I thankfully fell asleep and the spasms and seizures stopped. I had hoped that Sunday would be a better day. Despite my neck still insisting on spasming, the morning started off well. At midday, I unfortunately collapsed from standing, giving my head and body a good whack as I landed. Whilst the spasms were slightly more frequent, at first it seemed that this fall had not done much damage. However I quickly began to deteriorate. By 7pm the seizures had become constant, and the spasms wouldn’t stop. I was getting mere seconds of consciousness now and then, before slipping straight back into another seizure. My mum had originally thought that we would do the same as the night before and ride it out, however by midnight she phoned for a paramedic, who after assessing me phoned for an ambulance.
I arrived at my local hospital at 2am. I finally regained consciousness between 5 and 6 am. A doctor did not come to see me until 8 am! This particular doctor worried us. We were completely convinced that she was a crazy cleaner who had put on some scrubs and stolen a stethoscope. On seeing me she felt my forehead and told me I was beautiful, she then informed us that there was nothing she could do for me other than pray, which she then did. Now, I have nothing against prayer. I am Christian, and I appreciate people praying for me. However when I am in a hospital it’s not what I want or need! I need medication! If I was the doctor I would have tried administering muscle relaxants to see if they would take the edge of the spasms and in turn calm down the seizures. The doctor then told my parents that the hospital could do nothing for me and they should take me home, this was despite the fact I was still having dreadful spasms and could not sit up without going into a seizure.
My mother expressed her concerns to a nurse, who then called a consultant into see us. This man was rude beyond belief, if I had been well enough to argue or make a complaint against him then and there I would have. At one point during a seizure my mother tried to shield my head to stop me from hitting it against the metal bars on the bed. The consultant told my mum to stop it and that I would not hit my head, he refused to listen when my mum pointed out that I had already hit my head on them several times. He then started rambling on about the type of seizures I was having. My mum tried to point out to him that we already knew that I was having Non Epileptic Seizures, and that we were not concerned about them, we were concerned about the sudden change in my spasms and the way they had presented themselves so violently. The consultant listened to none of this and told my mum to stop talking. He was useless, arrogant, and down right rude!
We tried to get the hospital to call my consultant up in London to see if he could offer us any advice, but they refused to do this. My step dad had to do phone my consultants secretary instead and leave a message. Hours later, after my body had eventually calmed down, we left the hospital, with no help from them. I felt so angry and upset. I had been in extreme pain, and yet they did nothing. We had to do battle with them just to get them to give me some basic painkillers!! Once I arrived home I phoned my GP and explained the situation to him. He was extremely shocked at the lack of care I had received at the hospital and prescribed me some stronger pain relief. The whole weekend had left me feeling physically and emotionally broken. It was ridiculous.
Today, I had to go back to the hospital. Luckily this time it was just for an appointment with the surgical orthotic department. The man I saw was superb. He had dealt with Dystonia before and had a good understanding of it. After having a feel of my legs and getting me to stand up and show him the spasm, he said he thought he could help! He is going to make a splint that should hopefully prevent the spasms twisting my leg into painful positions. Whilst we there he made a plaster cast of my leg/foot, which should be ready for me in around 3 -4 weeks. He said that if the splint did not work for me then he would look at what other ways there were for him to help me! After telling him about the spasms my arm does, he suggested I get my GP to do another referral to him so that we can look at what he can do to help contain the spasm.
It was such a positive appointment. It helped me to not completely give up hope on Doctors and showed me that there are a handful out there who want to help you. You just have to find them. Both my neck and back have behaved so far today, which is fantastic and gives my body some much-needed relief. I feel slightly ‘normal’ again, to the point that I can see the distant light at the end of the tunnel. I can now relax and sing along to my favourite songs, knowing that no matter what happens and how bad it seems, there is always going to be something positive at the end of it. I just have to find it!
Yesterday I went up to London for an appointment with my consultant. I went prepared with many questions, and was determined to get everything I needed done. I left the appointment feeling very happy and relieved! My consultant had been extremely apologetic about the delay in getting back to us and the delay in administering treatment. He assured my mother and I, that this would not happen again, and that we were to email him if something else happened or when I needed my next lot of Botox done.
My main aim of the meeting was to leave with a care plan in place and to have received my Botox treatment. I was rather pleased, that instead of me having to ask for this, he brought the subject up himself. After feeling my Ormandibular Dystonia, he agreed to administer the Botox into both sides of my jaw. This lifted a massive weight of me, as I have stressed about this for weeks. It is a huge relief to know that in about a weeks time when the Botox kicks in, I will be feeling so much better!
My consultant has also referred me to a short stay physiotherapy/rehabilitation scheme at the hospital. In which they will admit me into the hospital for five days, and give me intensive physiotherapy/rehabilitation, they will also send me home with physiotherapy exercises to do. I am still on the waiting list for inpatient treatment on a longer basis, however the waiting list for this is a year-long. He is also referring me to one of my local hospitals to receive outpatient CBT, to help me deal with my Non Epileptic Seizures. The idea of this is to help give me methods to deal with pain, as my seizures are triggered by extreme pain.
Another big plus is that he is more than happy for me to start riding at my local stables, which once a week hold lessons for the disabled. He thought it was a very positive idea! I am over the moon as it means that I can get back on a horse!!! Hopefully (depending on the weather) I shall be having my first lesson later on this week, if the weather does not improve than I shall have my first lesson next week!
Yesterday was so positive, and has restored my faith in my consultant. I had gone to my appointment ready to fight to get treatment, instead it was all offered to me with out me having to ask! It is a huge relief to know that in 7-10 days time, the Botox will have kicked in fully and I will not have to worry about my jaw going into spasm for a while!
So I know Dystonia is thought of by the medical society as incurable but I have to disagree. Personally I think that the medical society know so little about Dystonia, that to say it is incurable is madness. Just because they have not found a magic treatment plan or pill that works for everyone does not mean it cannot be cured. Why accept such such a depressing prognosis? Why not stand up and say NO! I am going to beat this thing and prove you all wrong!!
Life has thrown a hell of a lot at me and so far I have beaten every single thing. I plan on beating Dystonia too. In 2009, I suffered from Complex Regional Pain Syndrome and I was hospitalised for six long months, yet I didn’t let it win! It took about 9 months but I beat it! I had to teach myself to walk again, I had to retain my brain to understand that things touching my leg weren’t actually harming me. It was agonising but I beat it!
If I can beat CRPS then I can beat Dystonia. The doctors all admit that CRPS and Dystonia are very similar, and treatment for them both is again very similar. So in my eyes if I can beat one, then I can beat both! Before all of this happened in July, I was so happy, I was training to be a midwife and loving it! I refuse to let Dystonia stop me!
So little Dystonia alien, if you can hear me, I would be very afraid! You have had your fun and now it is time for you to leave! I have had enough of you controlling my body! I am going to take back my body and I am going to go back to my studies!
Today I realised I had two rather important hospital appointments this coming week. Whilst neither of these appointments are dystonia related, the dystonia makes it damn near impossible to get to the appointments. To get to these hospitals, the appointment letters recommend that you use public transport as parking at the hospital and in the surrounding areas is extremely limited. At first this seemed just to be a mere annoyance, however this soon became a major issue.
Our town train station is not accessible by wheelchair, and the nearest one that is you must book 24 hours in advance to let them know that you will need a ramp, but yet it is even more of a struggle to get help getting off at the other end. Then factor in that the majority of the underground stations (including all the ones I needed to use) are not wheelchair friendly!
I have only been bound to a wheelchair since September 29th. Yes, I can hobble on my tip-toes, but this is only for a few steps before the dystonia alien rears its ugly head, it is no-where near far enough to enable me to get on and off a train. We had been trying to avoid getting a blue badge, not for any particular reason, but we seemed to be managing to get the wheelchair and me in and out of the car OK so there was no need for it.
I think it is disgusting that the public transport service has not been made wheelchair/disabled friendly! What if I had no-one to drive me and I had no choice but to use public transport? Am I expected to pay money I do not have for an over priced taxi to London, which would easily cost me hundreds of pounds? I think this shall be yet another issue that needs to be added to my ever growing list of complaints!
Yesterday I went up to London to have my first consultation with my new Neurologist. Despite having read a ton of positive patient reviews of him I was still very nervous. It turned out I had no reason to be nervous!! He was a truly lovely man! He listened to all my explanations, brought on spasms so he could see what they did to me, and was very understanding.
He has decided to get me admitted into hospital were I shall receive intensive physiotherapy and intensive rehabilitation. He believes that with the right treatment there is a good chance I could regain control of the majority of my body. He thinks its all to do with retraining my brain. I have no idea how long I shall be admitted for or when but I don’t care, their is a chance that I could return to being me! If this treatment plan doesn’t get the results my neurologist is hoping for then he plans to put me into a different hospital which he said had a fantastic intensive therapy programme but had a much longer waiting list.
It felt amazing to have a Neurologist who actually cared, who understood how much of an impact the dystonia was having on my life. I left the consultation knowing that no matter what happened from now on the neurologist would be there for me to contact and I know that he will try his best to help relieve me of my symptoms.
I am now more hopeful than ever! I know there is a chance that it may not work, but the belief he had in the treatment programme was very reassuring. I cannot wait for it all to begin! I am rather curious as to how it all works and have a million and one questions to ask now! I cannot wait to throw myself into it!
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